In his own words: living with herpes

Steve, 43, works as a database administrator in Kentucky. He learned he had genital herpes three years ago. He has formed a social group, where people with herpes can meet each other.

What was your first sign that something was wrong? What symptoms did you experience?

I developed a sore on my penis. I had been out fishing about a week before and thought it was poison ivy. But three weeks later, I had another one. I went to the doctor, and he did a culture. It came back herpes. For the first six months, I had outbreaks every three to four weeks. Now I have an outbreak about once a year. Whenever I get sick with a cold, bingo, here it comes.

What was the diagnosis experience like?

I saw my primary care doctor, and he did not refer me to anyone. When I moved to another city, the first family practitioner I saw suggested I transfer to another doctor in the practice who specializes in family health for people with herpes. She provides one-stop medical care for all my health needs.

What was your initial and then longer-term reaction to the diagnosis?

It wasn’t the end of the world for me, although I know people who were devastated by the news. I asked myself, is my life over or what? How am I going to tell somebody? The first thing I did was get on the Internet and look it up. The longer you have herpes, the less of a problem it becomes. You have fewer outbreaks, and they are easier to deal with.

How do you manage your disease?

One of the things the doctor taught me was to take an aspirin a day, because studies show a daily aspirin lowers the odds of having an outbreak. During an outbreak, I don’t use any cream or drugs. I don’t like to put anything in my body that I don’t have to. The sores last about a week or two. It doesn’t hurt that badly. I wear my regular BVD briefs. I feel I’m very lucky that it’s usually mild. I abstain or wear a condom during an outbreak and for a week after the sore is gone. I will not initiate any sexual relations during those times, but some girls will start something even after being told I am having an outbreak.

Did you have to make any lifestyle or dietary changes in response to your illness?

I try to stay healthy. I play golf, ride a bike, and walk every day with my dog. I watch my diet. I eat foods high in lysine, like mushrooms, cheese, and vegetables. If you eat foods higher in the enzyme lysine than arginine, you are less likely to have an outbreak. Also your diet has a lot to do with how well you feel overall. I eat a balanced diet that includes all of the food groups. If I’m going to have a snack, I make it an apple, pear, or peach, not something with a lot of sugar. I tell women I am dating that I have herpes. A lot of people with herpes don’t tell anyone, but to me, honesty is the only way.

Did you seek any type of emotional support?

I instantly joined a support group. The counselor in the group helped us to talk through our feelings and to realize that it’s not the end of the world. I’ve found people to talk with over the Internet. It’s helpful to talk about herpes. I can unburden my story on somebody. And when you know someone else has what you do and it’s not the end of life, it gives you hope.

Our social group holds dinners, parties, and other activities. It’s a nice way to get out and meet people. We’re all trying to make new friends. It’s not a support group. But by having other people around, there’s support. By interacting with people you know have herpes, it puts you at ease. And you don’t feel like you’re hiding something. I don’t have to worry about how I am going to tell a new woman. Herpes is something we already have in common.

Did/does your condition have any impact on your family?

No. I’m single. If I’m not going to sleep with someone, why do they need to know?

What advice would you give to anyone living with this disease?

Learn to forgive and forget. If you can get yourself to forgive the person who gave you herpes, it’s better for moving on with your life.

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.

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